About Carcinoid Syndrome
Carcinoid syndrome is a rare condition that occurs when a type of tumor called a carcinoid tumor releases certain chemicals, such as serotonin, into the bloodstream. These tumors are most often in the gastrointestinal (GI) tract or lungs.
Carcinoid syndrome typically develops in about 10 percent of people with carcinoid tumors, usually after the cancer has spread. Symptoms of carcinoid syndrome can include flushed skin on the face and chest, abdominal pain, diarrhea, difficulty breathing and wheezing. Other possible symptoms be associated with the heart, such as a slow heartbeat, high or low blood pressure, and leaking heart valves.
If you suspect you may have carcinoid syndrome, it is important to consult with a healthcare professional for diagnosis and appropriate management options.
Carcinoid syndrome occurs when a carcinoid tumor produces excessive hormone-like substances, such as serotonin, bradykinins, tachykinins, and prostaglandins.
- Normally, the body can neutralize these substances when tumors are in the gastrointestinal (GI) tract.
- However, if tumors are outside the GI tract (e.g., liver or ovaries), these substances cannot be broken down and are released into the bloodstream, leading to carcinoid syndrome symptoms.
- The main risk factor for carcinoid syndrome is having a carcinoid tumor, also called a neuroendocrine tumor. Carcinoid tumors most often occur in the gastrointestinal tract (small intestine, colon or appendix), or lungs.
The most common early symptoms of carcinoid syndrome include:
- Skin flushing: The skin on the face, head, and upper chest feels hot and turns pink or purple. Flushing of the skin may last from a few minutes to several hours. Spider-like veins may appear on the nose and upper lip. This may occur for no reason, or triggered by stress, drinking alcohol, or exercise.
- Diarrhea: Increased frequency of watery bowel movements, with at least 3 bowel movements per day. There may be abdominal cramping with the diarrhea.
- Difficulty breathing: Wheezing and shortness of breath may occur, typically at the same time as skin flushing.
- Heart related problems: Rapid heart rate (feels like the heart is racing), low blood pressure that causes symptoms of dizziness or feeling faint.
It's important to note that carcinoid syndrome can also lead to heart valve damage in later stages. If you experience any of these symptoms, it's essential to consult with a healthcare professional for proper evaluation and management.
To diagnose carcinoid syndrome, the following examinations, tests, and procedures are commonly performed:
- Medical history: The healthcare provider will ask about symptoms, triggers of symptoms, medical history, and medications.
- Physical exam: The healthcare provider will look for physical signs of a medical problem, such as skin, breathing, heart rate, or blood pressure abnormalities.
- Lab tests:
- Urine tests: A urine sample may be collected and checked for substances that indicate the body is breaking down serotonin, the body chemical released by carcinoid tumors.
- Blood tests: A blood sample may be collected and checked for levels of substances that may be released by carcinoid tumors.
- Imaging studies: CT scan or MRI scan may be performed to look for tumors or check if the carcinoid tumor to see if it has spread.
- Endoscopy: A thin tube with a camera may be used to check the gastrointestinal tract.
- Bronchoscopy: A thin tube with a camera may be used to check the respiratory tract.
It is important to follow up with your healthcare provider if your symptoms worsen or change after the initial physical exam. They will guide you through the diagnostic process and recommend appropriate examinations and tests based on your individual situation.
The goals of treatment for carcinoid syndrome are to manage the symptoms. The main treatment of carcinoid syndrome is to treat the carcinoid tumor.
Treatment of carcinoid tumors may include:
- Surgery: If possible, surgery is performed to remove some or all of the tumors, which can help prevent further spread.
- Medications:
- Somatostatin analogs: These medications inhibit hormone hypersecretion by binding to somatostatin receptors on NET cells. This may slow the growth of tumors and may help reduce the skin flushing and diarrhea symptoms of carcinoid syndrome.
- Chemotherapy: These drugs may be used to kill cancer cells to eliminate, slow growth, or shrink tumors.
- Targeted therapy: These drugs target specific proteins or enzymes in cancer cells to disrupt their ability to survive, grow, or spread.
- Antidiarrheals: These medications help treat carcinoid syndrome by reducing episodes of watery diarrhea. They may be used with somatostatin analog drugs.
- Radiation Therapy: Peptide receptor radionuclide therapy (PRRT) delivers targeted radiation to tumor cells using radiolabelled somatostatin analogs. PRRT is usually used for advanced carcinoid tumors.
- Embolization: For carcinoid tumors that have spread to the liver, a procedure may be performed to cut off the blood supply to cancer cells.
- Self care and health behavior changes: People with carcinoid tumors who are at risk for carcinoid syndrome should work with their healthcare team to:
- Know warning signs to get immediate medical help. Carcinoid symptoms can progress to a crisis if not treated. Warning signs include:
- Chest pain or heart palpitations
- Several diarrhea that has lasted several days
- Feeling dizzy and faint
- Avoid triggers: Some people find that avoiding alcohol and heavy exercise can help reduce symptoms.
- Manage stress: Stress may be a trigger of carcinoid syndrome. Stress management techniques like reaching out to loved ones, getting enough quality sleep, and meditating can help reduce stress. During a stressful event, take deep breaths may help.
- Manage flushing: Cool the face and chest with a damp cloth.
- Manage wheezing: Avoid cigarette smoke (stop smoking or avoid second-hand smoke). Ask the doctor about using an inhaler for wheezing. Try home remedies such as a vaporizer.
- Know warning signs to get immediate medical help. Carcinoid symptoms can progress to a crisis if not treated. Warning signs include:
It's important to note that treatment approaches may vary for each individual. It's best to consult with a healthcare professional for personalized advice.
Medication dosing may be affected by many factors. Check with your health care professional about dosing for your individual situation. Other side effects can occur. Check with your health care professional or read the information provided with your medication for additional side effect information.